Tuesday, October 29, 2013

Yesterday I told you about Ashley and her independent spirit. Ashley is and always has been very stubborn, very strong-willed and very driven. While those qualities can sometimes be hard to live with, they have served her well and helped her make the advances she has.

Then there's Ronnie.

Somewhere along the path of Ronnie's tumultuous past, he had learned to be very dependent. I know that as a young child with significant disabilities, it may have been easier to 'take care' of Ronnie rather than expect him to take care of himself. I also know that his past included many not-so-good situations, and Ronnie himself may have been afraid or at the very least, reluctant, to take the lead in his life. But, if he is going to achieve the level of independence he now says he wants, he's going to have to step up to the plate, and a great deal of that stepping up means attending to his medical needs religiously.

Here's one example. Ronnie must take a lot of medication. His kidney's are failing, his blood pressure is high, and his bladder doesn't work well. As a result, he takes hands full of medicines three times a day. Missing any of those medicines is not an option.

In all our discussions about living independently, Ronnie has been adamant that he can take his meds as he should, and can care for his other personal medical needs as he should. So I have decided several times to let him try. But the attempts have not gone well.

Video games, movies, chatting with girls, and other teenage vices have gotten in the way. Just last week he missed taking his medication multiple times.

For now, Ronnie has stepped back to let me manage his medicines and offer reminders about other medical needs. I know he gets frustrated, and like any 18 year old boy, longs for a life of his own. But somewhere, somehow, he is going to have to understand and accept what a life of his own means. I refuse to let him put his life in danger, and I hope he knows that is because I love him so much.

I want to support his goal of independence, but we need to work out the details, especially as it relates to medical needs.

Monday, October 28, 2013

As both Ashley and Ronnie have stepped into adulthood (they both turned 18 this year), my focus is on helping them become more independent. For a person with severe disabilities becoming more independent can mean many things - cooking, cleaning, advocating for themselves, etc. Both Ashley and Ronnie are still in school, and will be for a few more years, and the school is doing a good job of preparing them for employment. In addition, both have personal care aides who are working hard to instill a sense of independence in them. While this path to becoming more independent can be difficult, and progress is sometimes slow and difficult to see, every so often a new found skill of independence jumps up and high fives me. That happened this past Saturday.

Chip, Ronnie, Ashley and I were headed out to dinner to celebrate Chip's 23rd birthday. I drove to the restaurant, parked in a parking deck, and began the normal wheelchair-unloading, back pack hauling, helping Ashley out of the car routine. But before I could get to Ashley, she had undone her seatbelt, opened the car door, stepped out, steadied herself, stepped away from the door, closed the door, and waited for her wheelchair.

Did you get that? ASHLEY GOT OUT OF THE CAR ALL BY HERSELF!!!

While it may not sound like much to most people, trust me, it is HUGE. If Ashley can get herself out of the car, she can learn to get herself on and off a bus or a disabled transportation van. It means her world will open up, and she won't be dependent on others to always assist her in her travels.

Ashley set one small piece of dependency aside on Saturday, and I can't be any happier or prouder!!!

Tomorrow - Ronnie wants so badly to be independent. But is he doing all he can to get there????

Thursday, October 24, 2013

This post is probably not going to make me very popular with some folks that live in my little corner of the world. The following video speaks to a partnership between the Richmond ARC and the YMCA. The Richmond ARC, according to its website, "In partnership with families, the Greater Richmond ARC creates life-fulfilling opportunities for individuals with developmental disabilities." The Richmond YMCA states on its website, "The YMCA of Greater Richmond is a resource within your community of men, women and children committed to bringing about lasting personal and social change. With a focus on nurturing the potential of every child and teen, improving the nation's health and well-being and providing opportunities to give back and support neighbors, the Y enables youth, adults, families and communities to be healthy, confident, connected and secure.

Pay particular attention to the last slide on the video:

So, what I saw on the video was a group of gentlemen (or clients, as they are referred to on the video) who appear to have developmental disabilities, gentlemen who are pulling weeds, planting plants, and picking up trash for the privilege (reward?) of being able to play basketball in the YMCA-owned building. I saw an ARC staff person and a YMCA staff person with the group of gentlemen.

On the last slide of the video, I saw the statement, "The Y Values Inclusiveness."

Did you see "inclusiveness" in action during that video? Did you see anyone other than the gentlemen and the two staff persons?

If you are going to try to sell yourself as a purveyor of inclusiveness, you might want to actually model some of that inclusion. Just saying....

Wednesday, October 23, 2013

Tuesday, October 22, 2013

How do you handle the unknown? Are you able to live each day not worrying about the future of your child with significant disabilities? If you can - If I could - would we be better or worse off? And would our child be better or worse off if we could set aside the worry?

"Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade. And I’m so much happier this way."

He goes on to write:

" I have no idea what’s going to happen, with your child or mine. No one does. The secret, I think, is to embrace this fact, and teach yourself to love the unknown."

Do you think it is easier for this dad to "love the unknown" because his son is still very young? What if his son were approaching 21, being forced to leave school, and not knowing what the future held? What if this dad and his wife were facing serious health concerns and there were no other family members to step in and help care for his son? Does "loving the unknown" mean not worrying, not planning, not advocating, or is it a way to step back and take a much needed breath each day?

Does trying to "love the unknown" make you happier, or make your child happier? Being a super organized, super planning type of person, I don't think it would make me happier. I think I would just worry even more, wondering if I was doing my child an injustice by not trying to figure out what her future might look like. But is all that worrying and planning and organizing taking precious time away today and every day from my child? Can I, and can you, find a balance here - maybe a little less worrying/planning/organizing and a little more loving and just being?

I think I will try that approach for a while and see. (Dang, I just planned my approach to not plan, didn't I?)

Monday, October 21, 2013

Halloween has never been one of my favorite celebrations. I don't like images of the grim reaper or skeletons. I despise scary things, and have never understood why we celebrate witches, evil spirits and such. However, with some very clever marketing, it has become a time that most kids look forward to. But for kids with special needs, it can be a very challenging time.

There are several Internet sources that show you how to make a costume for a child in a wheelchair or a child that uses crutches, but for my kids, just trying to put a costume on was always a challenge. The sensory aspects were what bothered Ashley. She never understood putting clothes on top of clothes, or a wig on her head, or a mask on her face. She never liked makeup and has never eaten candy. And she certainly never understood walking door to door, holding out a bag, and having strangers put stuff in the bag. And for a child in a wheelchair, even getting to a neighbor's door was more often than not an impossibility.

Yes, we tried the harvest festivals at churches near us. But again, many of the activities there - bouncy houses, petting zoos, and carnival games not accessible by a blind child or a child in a wheelchair - meant my children didn't get much out of that activity.

So in recent years, we have just stayed home. We decorate the house, which the kids do like a lot, and we wait for trick or treaters. Rather, I wait for trick or treaters. As much as Ashley didn't understand knocking on neighbor's doors and getting candy, she doesn't understand children knocking on our door for candy.

All in all, Halloween isn't really important to us. How about you? What have you done to make the day and activities associated with it accessible to your child with disabilities?

Friday, October 18, 2013

Ashley visited the ENT (Ear/Nose/Throat) doctor yesterday. She is a regular visitor there, but still continues to have ear infection after ear infection. The doctor has said her eustachian tubes, which in most children begin to slant down as they grow, never slanted down. So whenever she is sick with a cold or allergies, we can count on an ear infection to follow. To complicate things further, Ashley has a disease which causes tumors to form, and she has had many tumor-like growths in both ears. The doctor is classifying them as cholesteatomas, and he must surgically go in and remove the offending tissue. The trick is to do that without damaging the ear more or causing increased hearing loss.

Ashley has a profound hearing loss in her right ear, and a severe loss in her left. She does use the little bit of hearing that she has very well though. Unfortunately, the cholesteatoma is in her left ear.

Hopefully I will find out a surgery date later today, but geez louise, this kid deserves a break, don't you think?

Thursday, October 17, 2013

Yes, I realize that it is Thursday and not Wednesday. Having Monday off for Columbus Day has me all discombobulated...

The government shutdown is not only affecting people, but also butterflies. The butterflies housed for most of the summer at Lewis Ginter Botanical Gardens and who were scheduled to make the trip to the Smithsonian in Washington, DC, must now move to Roanoke, Virginia because the Smithsonian is shut down. At least it is very good news for the folks in Roanoke who now get to enjoy the 'flutterbies'!

Wednesday, October 16, 2013

I want to offer a shout out to a movie theatre near our home and share with you what a wonderful job they are doing to accommodate people with disabilities.

The theatre is called United Artists West Tower Cinemas, and they are part of the Regal Entertainment Group. A few years ago, no cinemas in our area offered closed captioning or other accommodations other than wheelchair seating. Once visibility was raised by the disability community, Regal Entertainment Group was the first to step up to the plate, and West Tower Cinema, in particular, made things right.

West Tower offers the latest in captioning devices for people who are hard of hearing or deaf. They even work for 3D movies. In addition, and the accommodation that has impacted my family the most, is that they offer a free companion ticket for any person that accompanies a person with a disability. So yesterday, Chip, Ronnie, Ashley and I went to see Cloudy With a Chance of Meatball 2. Immediately after Chip requested the closed captioning glasses, the ticket taker radioed the manager, and within a minute, we had the glasses. Also, when paying for the tickets, Chip and I got the free companion tickets when Ronnie and Ashley paid for theirs. This, to me, is huge considering the price of movie tickets these days, and knowing that such an accommodation might get more folks with disabilities to the movies and into the community.

I also noticed that in our particular theatre, the handicapped seating was scattered throughout the theatre. People in wheelchairs have choices and are not just 'parked' in a row in the center of the theatre.

So thank you, West Tower! You are our first choice in movie theatres, and it is my hope that others will follow your lead. You're doing a great job!

Tuesday, October 15, 2013

My state, Virginia, has an ugly history of segregating people with disabilities. Just a couple of years ago, the Justice Department had had enough and told Virginia, via lawsuit, to clean up its act and get people out of institutions. Has there been movement in that direction? I'm not sure, but even if there has been progress towards community inclusion, overall I don't believe prevailing thought on the subject has improved.

For instance, the city of Virginia Beach is patting itself on the back and opening its wallet to welcome a development called Vanguard Landing. According to its website, Vanguard Landing is a place "where exceptional people live extraordinary lives."

What I call Vanguard Landing is lipstick on a pig.
A young lady named Ivy agrees with me. Check out her blog piece on the subject, especially the sections on her beliefs:

I believe in small group homes sprinkled throughout our community.
I believe in strengthening home care support so anybody with a disability can live at home.
I believe everybody should live in their community, near or with their loved ones.
Segregation is not the answer. It never was and never will be.

Ivy is correct, and the City of Virginia Beach needs to listen to her and others of us who have a real stake in the future of people with different abilities. Putting lipstick on a pig does not change the fact that it is a pig.

Wednesday, October 9, 2013

Tuesday, October 8, 2013

I started watching a show named DEREK on Netflix last week, and I am finding it quite intriquing. Not a fan of Ricky Gervais, and knowing that the title character was someone with a disability, I expected to be offended, angered, or at least bored by the show. But I have really enjoyed it.

Here are some of the reviews:

From the Washington Post:Ricky Gervais writes, directs and stars in this tenderhearted ensemble mockumentary about an enthusiastic employee at the Broad Hill retirement home. The show is a risk for Gervais, who combs his hair over and juts his jaw into an underbite in order to play the title character; we are to understand that Derek is not quite right but none of the words for it seem apt. (Simple? Special? Mentally disabled? Autistic?)

It’s ingenious that “Derek” is less preoccupied with a diagnosis and more focused on the minuscule but meaningful ways that Derek interacts with his elderly charges. The only problem is an overall feeling of hesi­ta­tion — on Gervais’s part, but also on his audience’s. You’re so braced for something to snap, for the comedy to stray into no-no land, that it’s hard to relax and appreciate “Derek’s” emotional intent.

And from vulture.com:Ricky Gervais's retirement-home sitcom Derek is no masterpiece. Its Office-style pseudo-documentary gimmicks seem even less organic here than in most shows of this type, and the improv is hit-and-miss, as improv usually is. But this Netflix series is worth seeing, if only to be able to have an opinion on its peculiar mix of tones, and to decide whether you think it's sincere or cloyingly manipulative. Derek is engaging and sometimes very funny. Parts of it are ostentatiously sentimental, verging on gooey.

That last aspect is the most intriguing. Based on his career highlights to date, most of which are geared toward taking the piss out of everything, I never thought I'd see a Gervais project that spent most of its screen time observing residents of an elder care facility while "bittersweet twilight of life" piano music toodles on the soundtrack. But that's what Derek does when it's not focusing on the retirement home staff, most of whom are melancholy or prematurely lost souls, or milking all the laughs it can from community events, including a cabaret show and a trip to the beach.

But my favorite review is from the NY Times:Derek is different — slack-jawed, anxious, hair plastered to his forehead, eyes darting to the mock-documentary camera. A visiting bureaucrat asks if he’s autistic, a question met with great indignation by the staff and never answered.

And that’s the point, really: Derek’s affliction is the world, for which he is too fragile and too good. His goodness is so frequently insisted upon that you might think you were watching some sort of clever, double-blind satire, if “Derek” weren’t so consistently, numbingly sincere.

I wasn't offended, I didn't get angry and I wasn't bored. If I had any suggestion, it would be to leave out the character, Kev, who does nothing but make crude penis jokes in every show. I think the show could be every bit as good without that character in it.

Though it is sometimes difficult to watch, I highly recommend you give it a chance!

Monday, October 7, 2013

My sweet Ashley took another step towards independence this past weekend. She opened a checking account - an account that is all hers, not shared with anyone else, with only her name attached to it. She will now manage her own money (with some assistance as needed), but spending decisions will be hers.

I commend the folks at the Virginia Credit Union for being so helpful and accommodating. They didn't ignore her disabilities, but they saw her - as a person, as a client, as a new credit union member. The person that helped us spoke directly to Ashley, not to me, and understood that I would need to interpret into sign language. She understood that Ashley needed some assistance finding the places to sign her name, and that her signature would look a lot like a doctor's! When we were finished, she thanked Ashley and shook her hand. Just like any other customer....

Friday, October 4, 2013

"For example, when you say “x to the n power,” the phrase “to the” means “begin a superscript,” and the word “power” means “return to the baseline.” So in my Braille code I created symbols that mean “begin superscript” and “return to the baseline.” My personal code for Braille mathematics began to evolve. I used it for my work in calculus and statistics."

Abraham Nemeth, the creator of a Braille system for math and science, has passed away at the age of 94.

Check out this article from The Atlantic for the story of how Professor Nemeth's code came to be, and why it still exists today.

Wednesday, October 2, 2013

Tuesday, October 1, 2013

"Smartphones and tablets, with their flat glass touch screens and nary a texture anywhere, may not seem like the best technological innovation for people who cannot see. But advocates for the blind say the devices could be the biggest assistive aid to come along since Braille was invented in the 1820s.

Counterintuitive? You bet. People with vision problems can use a smartphone’s voice commands to read or write. They can determine denominations of money using a camera app, figure out where they are using GPS and compass applications, and, like Mr. Perez, take photos."

Ashley Lynn

Why is this blog named Pipecleaner Dreams?

Who I am...

I am Ashley's Mom and the luckiest person in the world. I've often heard that if one is 'good' in this world, they will receive their rewards in the next. But, I have already received my reward - I have been given the privilege of raising this beautiful child. I'm a single parent of 5 children, 4 of whom have significant disabilities. They are all so very special and each has their own piece of my heart.